ORIGINAL ARTICLE
Women’s self-management of chronic illnesses in the context of caregiving: a grounded theory study Mercedes Martinez-Marcos and Carmen De la Cuesta-Benjumea
Aims and objectives. Uncover how women self-manage their own chronic illness while taking care of a dependent relative. Background. International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring. Design. Qualitative study using constructivist grounded theory. Methods. Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010–December 2011. Data were analysed using grounded theory procedures. Findings. Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Conclusions. Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers. Relevance to clinical practice. Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective selfcare measures and to deter those that are ineffective and lessen their quality of life.
What does this paper contribute to the wider global clinical community?
• Self-management helps women
•
•
caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Identifying the self-management strategies of women caregivers allows health professionals to acknowledge and reinforce efficient self-care processes that improve the quality of life and discourage those which are harmful. Nurses need to take into account what is acceptable to caregivers and what improves their quality of life, and adapt self-management strategies of chronic conditions to their lives as family caregivers.
Key words: caregiver, chronic illness, grounded theory, self-management, women Accepted for publication: 25 October 2014
Authors: Mercedes Martinez-Marcos, DUE, MSN, Professor, Department of Nursing, University Autonoma of Madrid, Madrid, Spain; Carmen De la Cuesta-Benjumea, MSc, PhD, Professor, Department of Health Psychology, Faculty of Health Sciences, University of Alicante, Alicante, Spain
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566, doi: 10.1111/jocn.12746
Correspondence: Mercedes Martinez-Marcos, Professor, Departmental Section of Nursing, University Autonoma of Madrid, C/ Arzobispo Morcillo s/n. 28029 Madrid, Spain. Telephone: +34 9149754943. E-mail: [email protected]
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Introduction Chronic conditions are the leading cause of death and have a great impact on those who have them and on their families. They account for over 86% of deaths and 77% of the burden of disease in Europe (Busse et al. 2010). In Spain, 465% of men and 558% of women live with a chronic disease and the percentages increase with age (European Health Examination Survey 2009). Taking into account the incidence of chronic health conditions and their effects, international policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Throughout the world women live longer but with poorer quality of life and with a heavier burden of morbidity. Women are also the caregivers of dependent people (Arnsberger et al. 2012). In Spain 75% of caregivers of disabled persons and 60% of caregivers of elderly dependent persons are women (IMSERSO 2005). The help given by women is greater in time and effort than that provided by men, this difference entails worse physical health for women and generates gender health inequalities (Larra~ naga et al. 2008). Caregivers are more prone to have chronic illness than non-caregivers and they devote less time to their own personal care (Tommis et al. 2009, Arnsberger et al. 2012), entailing a higher risk to their health (Jowsey et al. 2013). Caregivers experience levels of distress comparable to that of their sick relatives but receive less attention and support than them (Davis-Ali et al. 1993). The care of people with chronic illness is presently a priority in world health policies. People manage their own care requirements such as symptoms, medication or changes in lifestyle to achieve a full and meaningful life; this is commonly known as self-management (Lorig & Holman 2003).
Background Due to policy-makers and healthcare providers concern with the growing care burden associated with chronic diseases, patient self-management is becoming a prominent issue on national health agendas [World Health Organization (WHO) 2009]. Governments have focused on formal self-management education programmes to help patients engage in self-care (WHO 2009). These programmes theoretically, equip people with chronic disease with the necessary information and skills to manage their own health condition (Busse et al. 2010). Self-management has been defined as what people who suffer from a chronic illness do
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to manage the symptoms, medication and changes in lifestyle required (Lorig & Holman 2003). However, not everyone with a chronic illness wants or is able to be engaged in self-management (Kralik et al. 2010) and among those who prefer active engagement in their care, their desire and ability may vary according to their illness and life course (Paterson et al. 2001). The self-management process has been described as a series of successive stages. During the first stages people adhere to the regimen suggested by the health professionals and in the last stages they adjust their regimens to their own personal needs (Shimizu & Paterson 2007). Three main processes in the management of chronic illnesses have been identified: firstly, consisting in focusing on the needs of the illness, secondly, on the activation of individual, family and community resources available, and a thirdly, on living with a chronic illness and integrating it into the life context (Schulman-Green et al. 2012). Persons who live with a chronic illness follow different self-management patterns: consistent, episodic, on demand, and transitional; people use more than one pattern, combining constant and fluctuating behaviours (Audulv 2013). Several obstacles have been identified that influence the person’s capacity of self-management: comorbidity, physical limitations, depression, lack of social support and lack of awareness (Bower et al. 2009). However, health beliefs, knowledge and selfeffectiveness help people’s self-management (Bower et al. 2009). Family caregivers who live with chronic conditions are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their family (De La Cuesta-Benjumea 2010). They articulate strategies to enable them to focus their energy on caring and give priority to their role as caregivers rather than to their own chronic condition (Martinez-Marcos & De la Cuesta-Benjumea 2013). There is a disproportionate incidence of chronic disease and disability among women caregivers (Arnsberger et al. 2012) and their poor health may result, among other conditions, from the aggravation of their chronic illness (Pinquart & Sorensen 2007). Caregivers with chronic conditions are vulnerable, with time they experience a decline in their physical health as they neglect their own health because of the caregiving responsibilities and the need to continue with their role as caregivers (Tommis et al. 2009). While the literature has paid attention to self-management processes and emphasised the need to promote it among persons with chronic disease (Schulman-Green et al. 2012), little is known about self-management in the context of caregiving. © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Original article
Aim The present study is aimed at uncovering women caregivers’ management of their chronic illnesses while taking care of a dependent relative. It is part of a larger study on care giving and chronicity (Martinez-Marcos et al. 2010).
Methods Design This is a constructivist grounded theory (Charmaz 2006) that has been reported elsewhere (Martinez-Marcos & De la Cuesta-Benjumea 2013). Data and analysis are created through an interactive process whereby the researcher and participant construct a shared reality (Charmaz 2006). Thus, data and theories are not discovered but constructed (Charmaz 2006). The researcher’s account should present and evoke participant’s experiences.
Participants Thirty-nine women caregivers participated in the study, all of them care for a very dependent relative that required help and supervision with the activities of daily living and with the instrumental activities of daily living, some of them were bed ridden. Participants were purposefully sampled. The inclusion criteria was to care for a dependent relative for more than one year and to have a chronic illness for at least one year while caring for their relative. Potential participants were approached with the help of health professionals from health centres and members of a Caregiver Association. Participants were informed and consented in writing to participate in the study. As the study developed theoretical sampling took place to refine and elaborate on developing categories. Thus, participants with different ages, length of time in care giving, chronic illnesses and caregiving situation were selected in order capture variations in the emerging categories (See Table 1).
Data collection Data collection took place between April 2010–December 2011. A total of 23 semi-structured interviews were conducted followed by two focus groups. Based on the objectives of the study and on the review of the literature, an interview guide was drawn up with open-ended questions about the experience of taking care of a dependent relative in their health situation. Interviews took place mostly in the caregivers’ home. As data collection developed the inter© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Women caregivers and chronic illness Table 1 Participant demographic profile (n = 39) Age (Years) 40–50 51–60 61–70 >70 Education None Primary Secondary University Relationship Daughter Wife Daughter-in-law Mother Niece Duration of caregiving 1–5 years 6–10 years >10 years Caregiving situation Solo Formal help 2–4 hours/day Day centre Chronic illness Hypertension Diabetes Arthritis Cardiovascular disease Asthma Breast cancer COPD Osteoporosis Chronic fatigue syndrome
1 14 12 12 10 19 8 2 21 14 1 2 1 16 17 6 12 16 11 26 8 19 10 2 3 2 9 1
COPD, Chronic obstructive pulmonary disease.
view focused on the mechanisms that women caregivers used to manage their health condition. Once categories emerged from the interviews, two focus groups were conducted with six and ten women caregivers with chronic conditions to examine the relevance of the study findings and refine emerging categories. During these groups rich data was obtained about how participants manage their illnesses and their experience of living with their chronic condition while caring. Categories were saturated and data collection ended after the focus groups. All data were tape recorded and transcribed verbatim.
Data analysis Data were analysed concurrently with the data collection using the constant comparison method and theoretical sampling to uncover and develop categories. Data were col-
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lected, coded and analysed continually until categories emerged and were developed. Coding consisted of two phases, initial coding and focussed coding (Charmaz 2006). Emerging categories were continuously refined by checking across data sets. Theoretical sampling guided data collection and analysis narrowing the focus on emerging categories (Charmaz 2006). Focused coding served to describe the categories uncovered and saturated them. During the process of analysis theoretical memos were developed and relevant literature consulted as strategies to develop categories (Charmaz 2006). Writing drafts also contributed to the analysis as some categories were revised and researchers’ theoretical sensibility enhanced by consulting the literature. Three theoretical categories relating to the strategies that caregivers use to manage their chronic condition emerged from this analysis and self-management to balance was identified as the core category.
Rigour Data was coded independently by first author and discussed with second author for fit and relevance, theoretical sampling decisions were agreed upon by both authors. Differences in views were agreed upon by close inspection of the data, by consulting the relevant literature and by testing differences against data. Consensus on the categories was also reached by the researchers strengthening the credibility of the findings. As data collection proceeded emerging categories were presented to participants to ensure their relevance, resonance and to seek variety among and within categories. Interview questions were altered over time using theoretical sampling as researchers became sensitized to caregiver’s experiences. The study was presented in a meeting with health care professionals who attended caregivers in their homes. They found the study relevant, credible and useful for their practice. Throughout the study a field diary was used by the first author to register the theoretical aspects and data analysis, which contributes to the study rigour.
Ethical considerations The study was approved by the hospital research ethics committee and permission was granted by the health areas from where the participants were selected. To preserve anonymity, pseudonyms are used in the text below.
For people with chronic illnesses self-management implies a set of abilities and behaviours that people use for emotional and social function as well as for physical function in the context of their lives (Bodenheimer et al. 2002). Self-management has been described as a process of integration to attain a balance between the management of their own health condition, keep their well being and living a meaningful life (Whittemore & Dixon 2008). Findings from this study show that for women caregivers with chronic illnesses, self-management allows them to balance the demands of their illness with those of the relative they are taking care of, so they can both caregive and keep their chronic illness under control. Self-manage to balance, became the core category of the study. The strategies caregivers use to self-manage to balance are: (1) Self-regulating the treatment (2) Regulating their strength, (3) Controlling their emotions (See Table 2). These strategies are described hereunder.
Self-regulating the treatment Family caregivers regulate the treatment regimen of their chronic illnesses taking into account their own motivation, the available resources and the moment to carry out their treatments, without neglecting the needs of the relative they are taking care of. This is an exercise in balancing one’s own needs with those of the sick relative’s without neglecting either of them. It takes place under three main conditions when: (1) participants assess the potential negative consequences that their health condition may entail, (2) when caregiving demands increase and (3) when caregivers feel down. Thus, they engage in a self-regulating process that ranges from adhering fully to their treatment, to adapting their regimens and to doing only what is indispensable. Costs in caregivers’ health must be kept to the minimum.
Table 2 Self-management strategies of chronic health conditions in women caregivers to a dependent relative Strategies
Tactics
Self-regulating the treatment
Adhering fully Adapting regimens Doing only what’s indispensable Managing the caregiving demands Managing the available resources Rationalising their feelings Using prescribed drugs Using escapes mechanisms
Regulating their strength
Findings and discussion This study shows that participants throughout the years learned how to self-manage their illnesses.
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Controlling their emotions
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
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Adhering fully When women caregivers assess the potential negative effects and complications that their conditions can entail, they try hard to adhere to their treatment regimens. They follow the pharmacological treatment as prescribed, they adhere to the dietary regimens, they do the physical exercise as required and they attend their follow-up and control visits as prescribed by the health professionals. They do not want to find themselves in the same situation as the disabled relative they care for; their close contact with the disabling illness makes them aware of the suffering and health deterioration that this may entail. Participants did not want their health condition to complicate, or, in their own words ‘to go any further’. They do not want to need more complex treatment and they do not want their functionality to be reduced, as this would compromise the balance achieved between their health needs and those of the dependent relative. One participant expresses it in this way: I do what I have been told. I’m told to walk and I walk, I’m told to eat vegetables, and I eat vegetables, I’m told [to eat] with no salt, so no salt. I do all of that. . . I go to my nurse to get my blood pressure taken and to get weighed every two months, whenever she tells me to. (Maria)
Women caregivers and chronic illness
Although the amount and intensity of the exercise they do is not the same as they used to do, they make an effort to integrate it into their daily lives within the new circumstances of family care, and at least they fulfil some of the prescribed treatment regimen. Dietary regimens are adapted to the diet of the people they look after; participants stated that ‘they didn’t cook twice’. They stated that they tried to avoid non recommended food such as fat or salt; they know such restrictions are good for them and for the relative they take care of, although they are not very strict, they eat ‘the wrong things’, but they don’t do it constantly or in abundance, a participant explains: Sometimes I eat a little too much or eat the wrong things, because I cook for my children on Sundays and I use richer foods. Then during the week I eat my food and I feel better. (Ana)
They are less strict with their health check-ups, they do not abandon them, but they space them more widely than scheduled. Participants need to find ways to go for checkups without abandoning the care for their relative; thus, they adjust their appointments to the times when their relative needs them less, which does not always match their pre-established appointments, it all needs to ‘fit’, as a participant explains:
Adapting regimens When their relatives’ caregiving demands increase women have less time and resources to fully accomplish their treatment regimens. In such a situation they devote longer hours to family care and supervision, they are concerned about their relatives’ safety and they remain at home for longer periods. They adapt their regimens to these circumstances striving to both comply with the medical treatment and care for their dependent relative. Pharmacological treatment is the exception, as it does not require an extra effort from them; caregivers do not feel the need to adapt it. Thus, caregivers readjust the amount of exercise recommended by the professionals to the possibilities they find within their homes. Caregivers feel they cannot leave their homes nor their sick relative. They do their physical exercise on static bicycles, they walk up and down corridors, they follow exercise plans, and they continue with leisure activities that improve their functionality, such as crocheting or knitting. Participants also take the opportunities in their daily activities to walk and be active. One caregiver expresses it in this way:
I go to my blood pressure from time to time. You need to get an
Sometimes when I take the rubbish to the bin outside he falls asleep,
To fully follow their regimen feels like adding a sacrifice to an already sacrificed live, of which many agreeable aspects have been eliminated to fulfil caregiving:
and then I take a walk around the block. Then I have a static bicycle and sometimes when I watch TV I sit on the bike and cycle. (Lucıa)
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
appointment and you need to fit it in, you need to fit everything in. (Rosa)
Doing only what’s indispensable When the caregivers feel disheartened, discouraged and feel that their lives revolve solely around caring, the management of their chronic illness is minimized. They just carry out what they consider ‘indispensable’. They do not abandon themselves completely, they follow the pharmacological treatment and they attend their follow-up visits with the health professionals when they consider them important and necessary. The full management of their chronic illness such as following a diet or doing physical exercise poses a mental effort that caregivers do not feel capable of doing. One participant expressed it in this way: I just go to see my doctor, take my medication, and that’s all. . . this is all I do. . . I don’t do all the things I should be doing; I just don’t feel like doing these things. (Angela)
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M Martinez-Marcos and C De La Cuesta-Benjumea They told me I had to lose weight, I had to diet, but dieting is very hard . . . I don’t know, with this life we lead . . . it is so sacrificed. (Olga)
the care of their dependent relative. Caregiving is also a drain on participants’ personal health resources. For this reason, women in the study assess daily the strength they have to accomplish their tasks at home. From this selfassessment they manage the demands of caregiving and the resources available to accomplish it. These are two tactics that allow them to meet means with ends.
By keeping the medical treatment to the minimum, the morale and spirit that caregivers need to care for their dependent relative, remains. If this balancing exercise does not work, they can resort to controlling their emotions as it is later described. The decisions on self-care that people with a chronic illness make are influenced by the effects and the trajectory of their illness, the social context, the treatment, and the resources available (Thorne et al. 2003). In family caregivers, self-care is influenced by the development of their own condition, the emotional and instrumental support they may have, and the value that self-care has for them (Furlong & Wuest 2008). Self-care in the context of caregiving is also a coping strategy that enables them to maintain stable their identity as caregivers (Martinez-Marcos & De la Cuesta-Benjumea 2013). Coping enables to develop a sense of coherence, it is the way people struggle to preserve normality in the presence of others (Bury 1991). Findings form this study highlight that caregivers regulate their own treatment regimens as well as a self-management strategy that keeps under control their chronic illness so they can balance the illness and caregiving demands. The motivation they find to keep strong and keep on caregiving, the fear of the consequences of their own illness, the needs of the relative they look after and the emotional state they experience have influenced the tactics women caregivers use to regulate their own treatments. Decisions on self-care in chronic conditions are made within a complex context where sociocultural, interpersonal and psychological characteristics intervene, as well as spiritual beliefs and personal priorities; this is a fluctuating process that changes as does the way that the person experiences their own illness (Kralik et al. 2010). The women caregivers in this study make decisions related to their treatment regimens taking into account the complexity and fluctuations of family care.
You wanted to cook one thing but you cook something else, you
Regulating their strength
I feed him, because he can’t eat by himself either, then I put him
Chronic health conditions tend to have associated physical symptoms such as tiredness, fatigue, limitations on mobility and pain; these symptoms are variable and affect meeting the caregiving demands. The presence of some of the chronic conditions symptoms poses a double demand for caregivers. They cannot always perform the home tasks when they would like to, and some activities such as ironing can cause them pain, which reduces their strength in
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Managing the caregiving demands The participants in the study were aware that they could not do all the daily activities they used to do in the past. When the symptoms of chronic illnesses such as pain or fatigue manifest themselves, they see the activities they can engage in limited, and have to prioritise what they can deal with. Not all activities involve the same amount of work, nor the same effort or strength. Consequently, women assess the amount of strength they have and organise their work between ‘things that don’t matter’, and therefore can be left undone, and ‘important things’ which need to be done although they are energy consuming:
were supposed to clean something and you don’t do it, you leave it for another day. You skip things that are not important. (Laura)
By prioritizing tasks, they save the necessary strength to meet the caregiving demands: You need to make efforts, because you have to lift them up [Sick relative] and lifting somebody is hard, but these things can’t be helped . . . you can’t say I’m not doing it. (Pilar)
Besides, in order to manage the amount of caregiving work they balance rest with daily activity. This balance is achieved by alternating work with rest periods, they break up the work at home, and they do it ‘little by little’. They find a way to do both, their housework and the family caregiving work. However, a balance between rest and activity is difficult to attain, as caregivers are usually required unexpectedly and immediately by the demands of the dependent relative. Thus, they take the chance to rest when the relative rests, the times when they are less needed as caregivers:
into bed and then, after lunch, I have a little while to rest myself. (Marıa Jose)
Managing the available resources With the aim of regulating their own strength, participants manage the resources available. They are aware of the scarcity of resources they can count on. Family help is not always available, other relatives have their own responsibilities and © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Original article
they are ultimately the ones designated to look after the dependent relative. Women caregivers are sympathetic with their children; they can see that they work or that they have family duties of their own. When relatives visit they take the opportunity to ask them to do the hardest more energetic tasks. For example, they ask for help with the shopping, to iron and to move the dependent relative. They save their energy for when they have to do the work on their own, as Antonia said during the interview: ‘I let my sister give me a hand when she’s here, so I don’t have to do it on my own’. On top of managing the resources coming from relatives, participants use services available in the community, help from their neighbours and services offered by the local shops. They avoid unnecessary journeys and physical effort that may cause pain or diminish the amount of strength they need to take care of their relative. The literature shows that chronic conditions often limit the persons’ capacity to carry out activities of daily living, so they plan and prioritize these activities in order to save the energy to fulfil them (Jacelon 2010). This study shows that women caregivers regulate their own energy by managing the care demands and the resources, preserving energy for family care events.
Controlling their emotions As stated, chronic illness and taking care of an ill relative generate emotions. During the study women expressed that they sometimes felt ‘nervous’, ‘sad’ ‘discouraged’ and ‘like crying’. These emotions influence their health negatively as they impair caregivers’ control over their health condition, as one participant put it: ‘sometimes my blood pressure goes up when I feel very nervous’. On the other hand, caregivers are aware that they are essential, an important pillar in their family. They feel -and they expressed it in the interviews- that they can’t afford to break down; this is why they have learnt to dominate their emotions so that their health is not compromised. Three tactics learnt through the years prevent emotions from spilling over compromising the required balance in the caregiving context, they are: rationalising their feelings, using prescribed drugs and using escape mechanisms. They rationalize their feelings in order to find arguments not to give in to discouragement, arguments that help prevent them from losing control of their emotions. Thus, in the interviews they mentioned that they didn’t want to harm themselves; that they had to find the positive aspects of the situation in which they lived and compare it to that of other people. When emotions are intense participants resort to prescribed drugs to get their emotions under control, and © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Women caregivers and chronic illness
they acknowledge these are useful to alleviate anxiety. They manage drugs according to their self-assessed need, they take them regularly, just for periods and as required ‘for a few days’ only, as one participant said. They use these drugs as long as they feel they don’t interfere with the state of alertness they need to have to attend to the needs of the relative they look after, and make sure they don’t get ‘hooked’ permanently on the use of drugs. One participant said: I was prescribed a treatment for anxiety. But then I went and told them [health professionals]: “I think I’m feeling better and I don’t want to take these pills any longer. . . because then you get used to them”. (Teresa)
When reasoning or drugs fail to help, they use escape mechanisms such as going to the hairdresser, visiting their grandchildren, contacting their friends and organising a meal out. These are times of relief when they can share with those close to them their experiences and feelings; they feel less lonely and they put their illness and the caregiving worries aside: When I find myself very nervous I call my children on the phone. . . they talk to me and then it feels. . .that it helps. You feel more relaxed, different. (Elisa)
Data shows that through these escape mechanisms caregivers release negative emotions such as sadness, anger and frustration; they experience positive and happy emotions, and when they get back to their family environment they feel calmer and more serene. To live with a chronic health condition may entail emotional changes difficult to manage such as anxiety and depression (Clarke & Currie 2009), in addition caregiving burden generates anxiety and depression (Pinquart & Sorensen 2007). People respond to these emotional changes with management aimed at decreasing the possible negative influences on their illness. For example, they try to change negative thinking for positive thinking (Chen et al. 2008) and they carry out activities that allow them to avoid thinking about their illness (Ru et al. 2011). The escape mechanisms that participants of this study use, detach them from the context of their relative’s illness and their own, and help them to experience positive emotions. The present study shows that for women caregivers with chronic illnesses, self-management is the ability to balance attention to their own condition with family caregiving. In general personal objectives and the ability to perform the activities that are important in life influence the management of chronic illness (Audulv et al. 2009). Symptom control and chronic illness management might conflict when these do not help in the fulfilment of social functions
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(Townsend et al. 2006). Self-care by women with chronic illness is a moral responsibility influenced by gender; women carry out the care of their own chronic health condition with concern as to how these conditions can affect their loved ones and responding to the altruism and sensitivity needed to care for others (Clarke & Bennett 2013). The self-management strategies described in this study allow women caregivers to fulfil social expectations as competent caregivers. This could entail carrying a heavier burden, making their own needs invisible to their family and to health care professionals, effective self-management of a chronic illness, in this case, can consolidate a caregiving identity. As O’Connor (2007) pointed out, self-care arises really out of a need to care for others.
Limitations of the study The limitations of this study come from the characteristics of the participants. These are women over 50 years of age, with a primary education level who live with the relative they take care of. The self-management strategies that caregivers in this study use may be different from those used by caregivers from a different socio-economic background, or by those who share the caregiving with someone else. The chronic health conditions that the participants suffered were at stable stages, which allowed them to be autonomous; hence the strategies identified in this study could be limited by this situation. As stories are shaped by the relational context, the lack of detailed information on care recipients limits the understanding of our findings.
important that interventions with family caregivers focus on their own health, promote care of their chronic illness and their quality of life. Identifying the self-management strategies of women caregivers allows health professionals to acknowledge and reinforce efficient self-care processes that improve the quality of life and deter ineffective or harmful ones. Nurses need to take into account what is acceptable to caregivers and what improves their quality of life, and make an effort to adapt self-management strategies of chronic health conditions to the lives of family caregivers. This could be achieved with interventions that enhance the caregivers’ abilities and self-confidence in the management of their chronic health conditions, support them in solving their daily health problems and meeting their needs. Health professionals and specially nurses must uncover caregivers’ with chronic illness caring needs, so appropriate services and resources are deployed. Health professionals must foster shared responsibility of family care among family members.
Acknowledgements We would like to thank the caregivers who generously shared their experiences with us and the primary healthcare professionals who helped us to contact them. We are also grateful to the management of the day centre, who facilitated our contact with the caregivers and provided us with a meeting point for discussion groups.
Conclusion
Disclosure
This study shows the capacity of women caregivers to effectively and creatively integrate the self-management of their own chronic illness within the complexity of family care. The strategies they use balance the care of their chronic illnesses with the care of the dependent relative. However, self-management of their chronic illnesses renders their health needs invisible and reaffirms them as capable caregivers. This success may lead to a perpetuation of the inequitable distribution of the care load and leave their health needs unattended. Although they need attention and support, they may remain invisible to their relatives and to health professionals.
The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Relevance to clinical practice Interventions with women caregivers focus mainly on alleviating depressive symptoms and caregiver’s burden. It is also
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Funding This project was financed by Health Research Fund of the Spanish Ministry of Health and Consumer Affairs P10/ 00558 and the Foundation for Biomedical Research at the Puerta de Hierro University Hospital in Majadahonda, Madrid.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
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Women caregivers and chronic illness
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Clarke LH & Bennett E (2013) ‘You learn to live with all the things that are wrong with you’: gender and the experience of multiple chronic conditions in later life. Ageing and Society 33, 342–360. Clarke DM & Currie KC (2009) Depression, anxiety and their relationship with chronic diseases: a review of the epidemiology, risk and treatment evidence. Medical Journal of Australia 190, S54–S60. Davis-Ali S, Chesler MA & Chesney BK (1993) Recognizing cancer as a family disease: worries and support reported by patients and spouses. Social Work in Health Care 19, 45–65. De La Cuesta-Benjumea C (2010) The legitimacy of rest: conditions for the relief of burden in advanced dementia care-giving. Journal of Advanced Nursing 66, 988–998. European Health Examination Survey (EHES) (2009). National Institute for Health and Welfare of Spain. Available at: http://www.mspsi.es/estadEs tudios/estadisticas/EncuestaEuropea/ home.htm (accessed 22 February 2013). Furlong K & Wuest J (2008) Self-care behaviors of spouses caring for significant others with Alzheimer’s disease: the emergence of self-care worthiness as a salient condition. Qualitative Health Research 18, 1662–1672. Institute of Elderly and Social Services (IMSERSO) (2005). Cuidados a las personas mayores en los hogares espa~ noles. El entorno familiar [Care for Elder People in Spanish Homes. Family Environment]. Author, Madrid, Spain. Jacelon CS (2010) “Maintaining the balance” elders with chronic health problems managing life in the community. Rehabilitation Nursing 35, 16–22. Jowsey T, McRae I, Gillespie J, Banfield M & Yen L (2013) Time to care? Health of informal older carers and time spent on health related activities: an Australian survey. BioMed Central Public Health 13, 374. Kralik D, Koch T, Price K & Howard N (2010) The meaning of self-care for people with chronic illness. Journal of Nursing and Healthcare of Chronic Illness 2, 197–204.
Larra~ naga I, Martın U, Bacigalupe A, Begirist ain JM, Valderrama MJ & Bego~ na A (2008) Impacto del cuidado informal en la salud y la calidad de vida de las personas. An alisis de las desigualdades de genero. [The impact of informal care on the health and quality of life of people. An inequity gender analysis]. Gaceta Sanitaria 22, 443–450. Lorig KR & Holman H (2003) Self-management education History, definition, outcome and mechanisms. Annals of Behavioral Medicine 26, 1–7. Martinez-Marcos M & De la Cuesta-Benjumea C (2013) How women caregivers deal with their own long-term illness: a qualitative study. Journal of Advanced Nursing 70, 1825–1836. Martinez-Marcos M, De la Cuesta-Benjumea C, Espejo-Matorrales F, Moriano-Bejar P & Mateos-Rodilla J (2010) Cuidado familiar, dependencia y cronicidad. Un estudio cualitativo sobre mujeres cuidadoras. Proyecto financiado por el Fondo de Investigaci on Sanitaria, Ministerio de Ciencia e Innovaci on PI10/00558, Madrid, Espa~ na. [Family Care, Dependence and Chronic Illness. A Qualitative Study of Female Caregivers. A Project Research Study Approved by the Health Research Fund, Ministry of Science and Innovation-PI10/00558 Madrid, Spain]. O’Connor D (2007) Developing a caregiver identity: the positioning process. Journal of Aging Studies 21, 165–174. Paterson BL, Russell C & Thorne S (2001) Critical analysis of everyday self-care decision making in chronic illness. Journal of Advanced Nursing 35, 335–341. Pinquart M & Sorensen S (2007) Correlates of physical health of informal caregivers: a meta-analysis. Journals of Gerontology, Series B, Psychological Sciences and Social Sciences 62(2), 126–137. Ru T, Hong E & Hegney D (2011) A qualitative systematic review on the experiences of self-management in community-dwelling older women living with chronic illnesses. Journal of Bioinformatics Library of Systematic Reviews 9(32 Suppl), S1–S21.
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M Martinez-Marcos and C De La Cuesta-Benjumea Schulman-Green D, Jaser S, Martin F, Alonzo A, Grey M, McCorkle R, Redeker N, Reynolds N & Whittemore R (2012) Processes of self-management in chronic illness. Journal of Nursing Scholarship 44, 136–144. Shimizu Y & Paterson BL (2007) A crosscultural comparison of the developmental evolution of expertise in diabetes self-management. Journal of Clinical Nursing 16, 350–357.
Thorne S, Paterson B & Russell C (2003) The structure of everyday self-care decision making in chronic illness. Qualitative Health Research 13, 1337–1352. Tommis Y, Robinson CA, Seddon D & Woods B (2009) Carers with chronic conditions: changes over time in their physical health. Chronic Illness 5, 155–164. Townsend A, Wyke S & Hunt K (2006) Self-managing and managing self:
practical and moral dilemmas in accounts of living with chronic illness. Chronic Illness 2, 185–194. Whittemore R & Dixon J (2008) Chronic illness: the process of integration. Journal of Nursing 17, 177–187. World Health Organization (2009) SelfCare in the Context of Primary Health Care: Report of the Regional Consultation, Bangkok, Thailand, 7–9 January 2009. World Health Organization, New Delhi.
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© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Women’s self-management of chronic illnesses in the context of caregiving: a grounded theory study Mercedes Martinez-Marcos and Carmen De la Cuesta-Benjumea
Aims and objectives. Uncover how women self-manage their own chronic illness while taking care of a dependent relative. Background. International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring. Design. Qualitative study using constructivist grounded theory. Methods. Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010–December 2011. Data were analysed using grounded theory procedures. Findings. Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Conclusions. Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers. Relevance to clinical practice. Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective selfcare measures and to deter those that are ineffective and lessen their quality of life.
What does this paper contribute to the wider global clinical community?
• Self-management helps women
•
•
caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Identifying the self-management strategies of women caregivers allows health professionals to acknowledge and reinforce efficient self-care processes that improve the quality of life and discourage those which are harmful. Nurses need to take into account what is acceptable to caregivers and what improves their quality of life, and adapt self-management strategies of chronic conditions to their lives as family caregivers.
Key words: caregiver, chronic illness, grounded theory, self-management, women Accepted for publication: 25 October 2014
Authors: Mercedes Martinez-Marcos, DUE, MSN, Professor, Department of Nursing, University Autonoma of Madrid, Madrid, Spain; Carmen De la Cuesta-Benjumea, MSc, PhD, Professor, Department of Health Psychology, Faculty of Health Sciences, University of Alicante, Alicante, Spain
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566, doi: 10.1111/jocn.12746
Correspondence: Mercedes Martinez-Marcos, Professor, Departmental Section of Nursing, University Autonoma of Madrid, C/ Arzobispo Morcillo s/n. 28029 Madrid, Spain. Telephone: +34 9149754943. E-mail: [email protected]
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Introduction Chronic conditions are the leading cause of death and have a great impact on those who have them and on their families. They account for over 86% of deaths and 77% of the burden of disease in Europe (Busse et al. 2010). In Spain, 465% of men and 558% of women live with a chronic disease and the percentages increase with age (European Health Examination Survey 2009). Taking into account the incidence of chronic health conditions and their effects, international policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Throughout the world women live longer but with poorer quality of life and with a heavier burden of morbidity. Women are also the caregivers of dependent people (Arnsberger et al. 2012). In Spain 75% of caregivers of disabled persons and 60% of caregivers of elderly dependent persons are women (IMSERSO 2005). The help given by women is greater in time and effort than that provided by men, this difference entails worse physical health for women and generates gender health inequalities (Larra~ naga et al. 2008). Caregivers are more prone to have chronic illness than non-caregivers and they devote less time to their own personal care (Tommis et al. 2009, Arnsberger et al. 2012), entailing a higher risk to their health (Jowsey et al. 2013). Caregivers experience levels of distress comparable to that of their sick relatives but receive less attention and support than them (Davis-Ali et al. 1993). The care of people with chronic illness is presently a priority in world health policies. People manage their own care requirements such as symptoms, medication or changes in lifestyle to achieve a full and meaningful life; this is commonly known as self-management (Lorig & Holman 2003).
Background Due to policy-makers and healthcare providers concern with the growing care burden associated with chronic diseases, patient self-management is becoming a prominent issue on national health agendas [World Health Organization (WHO) 2009]. Governments have focused on formal self-management education programmes to help patients engage in self-care (WHO 2009). These programmes theoretically, equip people with chronic disease with the necessary information and skills to manage their own health condition (Busse et al. 2010). Self-management has been defined as what people who suffer from a chronic illness do
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to manage the symptoms, medication and changes in lifestyle required (Lorig & Holman 2003). However, not everyone with a chronic illness wants or is able to be engaged in self-management (Kralik et al. 2010) and among those who prefer active engagement in their care, their desire and ability may vary according to their illness and life course (Paterson et al. 2001). The self-management process has been described as a series of successive stages. During the first stages people adhere to the regimen suggested by the health professionals and in the last stages they adjust their regimens to their own personal needs (Shimizu & Paterson 2007). Three main processes in the management of chronic illnesses have been identified: firstly, consisting in focusing on the needs of the illness, secondly, on the activation of individual, family and community resources available, and a thirdly, on living with a chronic illness and integrating it into the life context (Schulman-Green et al. 2012). Persons who live with a chronic illness follow different self-management patterns: consistent, episodic, on demand, and transitional; people use more than one pattern, combining constant and fluctuating behaviours (Audulv 2013). Several obstacles have been identified that influence the person’s capacity of self-management: comorbidity, physical limitations, depression, lack of social support and lack of awareness (Bower et al. 2009). However, health beliefs, knowledge and selfeffectiveness help people’s self-management (Bower et al. 2009). Family caregivers who live with chronic conditions are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their family (De La Cuesta-Benjumea 2010). They articulate strategies to enable them to focus their energy on caring and give priority to their role as caregivers rather than to their own chronic condition (Martinez-Marcos & De la Cuesta-Benjumea 2013). There is a disproportionate incidence of chronic disease and disability among women caregivers (Arnsberger et al. 2012) and their poor health may result, among other conditions, from the aggravation of their chronic illness (Pinquart & Sorensen 2007). Caregivers with chronic conditions are vulnerable, with time they experience a decline in their physical health as they neglect their own health because of the caregiving responsibilities and the need to continue with their role as caregivers (Tommis et al. 2009). While the literature has paid attention to self-management processes and emphasised the need to promote it among persons with chronic disease (Schulman-Green et al. 2012), little is known about self-management in the context of caregiving. © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Original article
Aim The present study is aimed at uncovering women caregivers’ management of their chronic illnesses while taking care of a dependent relative. It is part of a larger study on care giving and chronicity (Martinez-Marcos et al. 2010).
Methods Design This is a constructivist grounded theory (Charmaz 2006) that has been reported elsewhere (Martinez-Marcos & De la Cuesta-Benjumea 2013). Data and analysis are created through an interactive process whereby the researcher and participant construct a shared reality (Charmaz 2006). Thus, data and theories are not discovered but constructed (Charmaz 2006). The researcher’s account should present and evoke participant’s experiences.
Participants Thirty-nine women caregivers participated in the study, all of them care for a very dependent relative that required help and supervision with the activities of daily living and with the instrumental activities of daily living, some of them were bed ridden. Participants were purposefully sampled. The inclusion criteria was to care for a dependent relative for more than one year and to have a chronic illness for at least one year while caring for their relative. Potential participants were approached with the help of health professionals from health centres and members of a Caregiver Association. Participants were informed and consented in writing to participate in the study. As the study developed theoretical sampling took place to refine and elaborate on developing categories. Thus, participants with different ages, length of time in care giving, chronic illnesses and caregiving situation were selected in order capture variations in the emerging categories (See Table 1).
Data collection Data collection took place between April 2010–December 2011. A total of 23 semi-structured interviews were conducted followed by two focus groups. Based on the objectives of the study and on the review of the literature, an interview guide was drawn up with open-ended questions about the experience of taking care of a dependent relative in their health situation. Interviews took place mostly in the caregivers’ home. As data collection developed the inter© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Women caregivers and chronic illness Table 1 Participant demographic profile (n = 39) Age (Years) 40–50 51–60 61–70 >70 Education None Primary Secondary University Relationship Daughter Wife Daughter-in-law Mother Niece Duration of caregiving 1–5 years 6–10 years >10 years Caregiving situation Solo Formal help 2–4 hours/day Day centre Chronic illness Hypertension Diabetes Arthritis Cardiovascular disease Asthma Breast cancer COPD Osteoporosis Chronic fatigue syndrome
1 14 12 12 10 19 8 2 21 14 1 2 1 16 17 6 12 16 11 26 8 19 10 2 3 2 9 1
COPD, Chronic obstructive pulmonary disease.
view focused on the mechanisms that women caregivers used to manage their health condition. Once categories emerged from the interviews, two focus groups were conducted with six and ten women caregivers with chronic conditions to examine the relevance of the study findings and refine emerging categories. During these groups rich data was obtained about how participants manage their illnesses and their experience of living with their chronic condition while caring. Categories were saturated and data collection ended after the focus groups. All data were tape recorded and transcribed verbatim.
Data analysis Data were analysed concurrently with the data collection using the constant comparison method and theoretical sampling to uncover and develop categories. Data were col-
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lected, coded and analysed continually until categories emerged and were developed. Coding consisted of two phases, initial coding and focussed coding (Charmaz 2006). Emerging categories were continuously refined by checking across data sets. Theoretical sampling guided data collection and analysis narrowing the focus on emerging categories (Charmaz 2006). Focused coding served to describe the categories uncovered and saturated them. During the process of analysis theoretical memos were developed and relevant literature consulted as strategies to develop categories (Charmaz 2006). Writing drafts also contributed to the analysis as some categories were revised and researchers’ theoretical sensibility enhanced by consulting the literature. Three theoretical categories relating to the strategies that caregivers use to manage their chronic condition emerged from this analysis and self-management to balance was identified as the core category.
Rigour Data was coded independently by first author and discussed with second author for fit and relevance, theoretical sampling decisions were agreed upon by both authors. Differences in views were agreed upon by close inspection of the data, by consulting the relevant literature and by testing differences against data. Consensus on the categories was also reached by the researchers strengthening the credibility of the findings. As data collection proceeded emerging categories were presented to participants to ensure their relevance, resonance and to seek variety among and within categories. Interview questions were altered over time using theoretical sampling as researchers became sensitized to caregiver’s experiences. The study was presented in a meeting with health care professionals who attended caregivers in their homes. They found the study relevant, credible and useful for their practice. Throughout the study a field diary was used by the first author to register the theoretical aspects and data analysis, which contributes to the study rigour.
Ethical considerations The study was approved by the hospital research ethics committee and permission was granted by the health areas from where the participants were selected. To preserve anonymity, pseudonyms are used in the text below.
For people with chronic illnesses self-management implies a set of abilities and behaviours that people use for emotional and social function as well as for physical function in the context of their lives (Bodenheimer et al. 2002). Self-management has been described as a process of integration to attain a balance between the management of their own health condition, keep their well being and living a meaningful life (Whittemore & Dixon 2008). Findings from this study show that for women caregivers with chronic illnesses, self-management allows them to balance the demands of their illness with those of the relative they are taking care of, so they can both caregive and keep their chronic illness under control. Self-manage to balance, became the core category of the study. The strategies caregivers use to self-manage to balance are: (1) Self-regulating the treatment (2) Regulating their strength, (3) Controlling their emotions (See Table 2). These strategies are described hereunder.
Self-regulating the treatment Family caregivers regulate the treatment regimen of their chronic illnesses taking into account their own motivation, the available resources and the moment to carry out their treatments, without neglecting the needs of the relative they are taking care of. This is an exercise in balancing one’s own needs with those of the sick relative’s without neglecting either of them. It takes place under three main conditions when: (1) participants assess the potential negative consequences that their health condition may entail, (2) when caregiving demands increase and (3) when caregivers feel down. Thus, they engage in a self-regulating process that ranges from adhering fully to their treatment, to adapting their regimens and to doing only what is indispensable. Costs in caregivers’ health must be kept to the minimum.
Table 2 Self-management strategies of chronic health conditions in women caregivers to a dependent relative Strategies
Tactics
Self-regulating the treatment
Adhering fully Adapting regimens Doing only what’s indispensable Managing the caregiving demands Managing the available resources Rationalising their feelings Using prescribed drugs Using escapes mechanisms
Regulating their strength
Findings and discussion This study shows that participants throughout the years learned how to self-manage their illnesses.
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Controlling their emotions
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Original article
Adhering fully When women caregivers assess the potential negative effects and complications that their conditions can entail, they try hard to adhere to their treatment regimens. They follow the pharmacological treatment as prescribed, they adhere to the dietary regimens, they do the physical exercise as required and they attend their follow-up and control visits as prescribed by the health professionals. They do not want to find themselves in the same situation as the disabled relative they care for; their close contact with the disabling illness makes them aware of the suffering and health deterioration that this may entail. Participants did not want their health condition to complicate, or, in their own words ‘to go any further’. They do not want to need more complex treatment and they do not want their functionality to be reduced, as this would compromise the balance achieved between their health needs and those of the dependent relative. One participant expresses it in this way: I do what I have been told. I’m told to walk and I walk, I’m told to eat vegetables, and I eat vegetables, I’m told [to eat] with no salt, so no salt. I do all of that. . . I go to my nurse to get my blood pressure taken and to get weighed every two months, whenever she tells me to. (Maria)
Women caregivers and chronic illness
Although the amount and intensity of the exercise they do is not the same as they used to do, they make an effort to integrate it into their daily lives within the new circumstances of family care, and at least they fulfil some of the prescribed treatment regimen. Dietary regimens are adapted to the diet of the people they look after; participants stated that ‘they didn’t cook twice’. They stated that they tried to avoid non recommended food such as fat or salt; they know such restrictions are good for them and for the relative they take care of, although they are not very strict, they eat ‘the wrong things’, but they don’t do it constantly or in abundance, a participant explains: Sometimes I eat a little too much or eat the wrong things, because I cook for my children on Sundays and I use richer foods. Then during the week I eat my food and I feel better. (Ana)
They are less strict with their health check-ups, they do not abandon them, but they space them more widely than scheduled. Participants need to find ways to go for checkups without abandoning the care for their relative; thus, they adjust their appointments to the times when their relative needs them less, which does not always match their pre-established appointments, it all needs to ‘fit’, as a participant explains:
Adapting regimens When their relatives’ caregiving demands increase women have less time and resources to fully accomplish their treatment regimens. In such a situation they devote longer hours to family care and supervision, they are concerned about their relatives’ safety and they remain at home for longer periods. They adapt their regimens to these circumstances striving to both comply with the medical treatment and care for their dependent relative. Pharmacological treatment is the exception, as it does not require an extra effort from them; caregivers do not feel the need to adapt it. Thus, caregivers readjust the amount of exercise recommended by the professionals to the possibilities they find within their homes. Caregivers feel they cannot leave their homes nor their sick relative. They do their physical exercise on static bicycles, they walk up and down corridors, they follow exercise plans, and they continue with leisure activities that improve their functionality, such as crocheting or knitting. Participants also take the opportunities in their daily activities to walk and be active. One caregiver expresses it in this way:
I go to my blood pressure from time to time. You need to get an
Sometimes when I take the rubbish to the bin outside he falls asleep,
To fully follow their regimen feels like adding a sacrifice to an already sacrificed live, of which many agreeable aspects have been eliminated to fulfil caregiving:
and then I take a walk around the block. Then I have a static bicycle and sometimes when I watch TV I sit on the bike and cycle. (Lucıa)
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
appointment and you need to fit it in, you need to fit everything in. (Rosa)
Doing only what’s indispensable When the caregivers feel disheartened, discouraged and feel that their lives revolve solely around caring, the management of their chronic illness is minimized. They just carry out what they consider ‘indispensable’. They do not abandon themselves completely, they follow the pharmacological treatment and they attend their follow-up visits with the health professionals when they consider them important and necessary. The full management of their chronic illness such as following a diet or doing physical exercise poses a mental effort that caregivers do not feel capable of doing. One participant expressed it in this way: I just go to see my doctor, take my medication, and that’s all. . . this is all I do. . . I don’t do all the things I should be doing; I just don’t feel like doing these things. (Angela)
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M Martinez-Marcos and C De La Cuesta-Benjumea They told me I had to lose weight, I had to diet, but dieting is very hard . . . I don’t know, with this life we lead . . . it is so sacrificed. (Olga)
the care of their dependent relative. Caregiving is also a drain on participants’ personal health resources. For this reason, women in the study assess daily the strength they have to accomplish their tasks at home. From this selfassessment they manage the demands of caregiving and the resources available to accomplish it. These are two tactics that allow them to meet means with ends.
By keeping the medical treatment to the minimum, the morale and spirit that caregivers need to care for their dependent relative, remains. If this balancing exercise does not work, they can resort to controlling their emotions as it is later described. The decisions on self-care that people with a chronic illness make are influenced by the effects and the trajectory of their illness, the social context, the treatment, and the resources available (Thorne et al. 2003). In family caregivers, self-care is influenced by the development of their own condition, the emotional and instrumental support they may have, and the value that self-care has for them (Furlong & Wuest 2008). Self-care in the context of caregiving is also a coping strategy that enables them to maintain stable their identity as caregivers (Martinez-Marcos & De la Cuesta-Benjumea 2013). Coping enables to develop a sense of coherence, it is the way people struggle to preserve normality in the presence of others (Bury 1991). Findings form this study highlight that caregivers regulate their own treatment regimens as well as a self-management strategy that keeps under control their chronic illness so they can balance the illness and caregiving demands. The motivation they find to keep strong and keep on caregiving, the fear of the consequences of their own illness, the needs of the relative they look after and the emotional state they experience have influenced the tactics women caregivers use to regulate their own treatments. Decisions on self-care in chronic conditions are made within a complex context where sociocultural, interpersonal and psychological characteristics intervene, as well as spiritual beliefs and personal priorities; this is a fluctuating process that changes as does the way that the person experiences their own illness (Kralik et al. 2010). The women caregivers in this study make decisions related to their treatment regimens taking into account the complexity and fluctuations of family care.
You wanted to cook one thing but you cook something else, you
Regulating their strength
I feed him, because he can’t eat by himself either, then I put him
Chronic health conditions tend to have associated physical symptoms such as tiredness, fatigue, limitations on mobility and pain; these symptoms are variable and affect meeting the caregiving demands. The presence of some of the chronic conditions symptoms poses a double demand for caregivers. They cannot always perform the home tasks when they would like to, and some activities such as ironing can cause them pain, which reduces their strength in
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Managing the caregiving demands The participants in the study were aware that they could not do all the daily activities they used to do in the past. When the symptoms of chronic illnesses such as pain or fatigue manifest themselves, they see the activities they can engage in limited, and have to prioritise what they can deal with. Not all activities involve the same amount of work, nor the same effort or strength. Consequently, women assess the amount of strength they have and organise their work between ‘things that don’t matter’, and therefore can be left undone, and ‘important things’ which need to be done although they are energy consuming:
were supposed to clean something and you don’t do it, you leave it for another day. You skip things that are not important. (Laura)
By prioritizing tasks, they save the necessary strength to meet the caregiving demands: You need to make efforts, because you have to lift them up [Sick relative] and lifting somebody is hard, but these things can’t be helped . . . you can’t say I’m not doing it. (Pilar)
Besides, in order to manage the amount of caregiving work they balance rest with daily activity. This balance is achieved by alternating work with rest periods, they break up the work at home, and they do it ‘little by little’. They find a way to do both, their housework and the family caregiving work. However, a balance between rest and activity is difficult to attain, as caregivers are usually required unexpectedly and immediately by the demands of the dependent relative. Thus, they take the chance to rest when the relative rests, the times when they are less needed as caregivers:
into bed and then, after lunch, I have a little while to rest myself. (Marıa Jose)
Managing the available resources With the aim of regulating their own strength, participants manage the resources available. They are aware of the scarcity of resources they can count on. Family help is not always available, other relatives have their own responsibilities and © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Original article
they are ultimately the ones designated to look after the dependent relative. Women caregivers are sympathetic with their children; they can see that they work or that they have family duties of their own. When relatives visit they take the opportunity to ask them to do the hardest more energetic tasks. For example, they ask for help with the shopping, to iron and to move the dependent relative. They save their energy for when they have to do the work on their own, as Antonia said during the interview: ‘I let my sister give me a hand when she’s here, so I don’t have to do it on my own’. On top of managing the resources coming from relatives, participants use services available in the community, help from their neighbours and services offered by the local shops. They avoid unnecessary journeys and physical effort that may cause pain or diminish the amount of strength they need to take care of their relative. The literature shows that chronic conditions often limit the persons’ capacity to carry out activities of daily living, so they plan and prioritize these activities in order to save the energy to fulfil them (Jacelon 2010). This study shows that women caregivers regulate their own energy by managing the care demands and the resources, preserving energy for family care events.
Controlling their emotions As stated, chronic illness and taking care of an ill relative generate emotions. During the study women expressed that they sometimes felt ‘nervous’, ‘sad’ ‘discouraged’ and ‘like crying’. These emotions influence their health negatively as they impair caregivers’ control over their health condition, as one participant put it: ‘sometimes my blood pressure goes up when I feel very nervous’. On the other hand, caregivers are aware that they are essential, an important pillar in their family. They feel -and they expressed it in the interviews- that they can’t afford to break down; this is why they have learnt to dominate their emotions so that their health is not compromised. Three tactics learnt through the years prevent emotions from spilling over compromising the required balance in the caregiving context, they are: rationalising their feelings, using prescribed drugs and using escape mechanisms. They rationalize their feelings in order to find arguments not to give in to discouragement, arguments that help prevent them from losing control of their emotions. Thus, in the interviews they mentioned that they didn’t want to harm themselves; that they had to find the positive aspects of the situation in which they lived and compare it to that of other people. When emotions are intense participants resort to prescribed drugs to get their emotions under control, and © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Women caregivers and chronic illness
they acknowledge these are useful to alleviate anxiety. They manage drugs according to their self-assessed need, they take them regularly, just for periods and as required ‘for a few days’ only, as one participant said. They use these drugs as long as they feel they don’t interfere with the state of alertness they need to have to attend to the needs of the relative they look after, and make sure they don’t get ‘hooked’ permanently on the use of drugs. One participant said: I was prescribed a treatment for anxiety. But then I went and told them [health professionals]: “I think I’m feeling better and I don’t want to take these pills any longer. . . because then you get used to them”. (Teresa)
When reasoning or drugs fail to help, they use escape mechanisms such as going to the hairdresser, visiting their grandchildren, contacting their friends and organising a meal out. These are times of relief when they can share with those close to them their experiences and feelings; they feel less lonely and they put their illness and the caregiving worries aside: When I find myself very nervous I call my children on the phone. . . they talk to me and then it feels. . .that it helps. You feel more relaxed, different. (Elisa)
Data shows that through these escape mechanisms caregivers release negative emotions such as sadness, anger and frustration; they experience positive and happy emotions, and when they get back to their family environment they feel calmer and more serene. To live with a chronic health condition may entail emotional changes difficult to manage such as anxiety and depression (Clarke & Currie 2009), in addition caregiving burden generates anxiety and depression (Pinquart & Sorensen 2007). People respond to these emotional changes with management aimed at decreasing the possible negative influences on their illness. For example, they try to change negative thinking for positive thinking (Chen et al. 2008) and they carry out activities that allow them to avoid thinking about their illness (Ru et al. 2011). The escape mechanisms that participants of this study use, detach them from the context of their relative’s illness and their own, and help them to experience positive emotions. The present study shows that for women caregivers with chronic illnesses, self-management is the ability to balance attention to their own condition with family caregiving. In general personal objectives and the ability to perform the activities that are important in life influence the management of chronic illness (Audulv et al. 2009). Symptom control and chronic illness management might conflict when these do not help in the fulfilment of social functions
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(Townsend et al. 2006). Self-care by women with chronic illness is a moral responsibility influenced by gender; women carry out the care of their own chronic health condition with concern as to how these conditions can affect their loved ones and responding to the altruism and sensitivity needed to care for others (Clarke & Bennett 2013). The self-management strategies described in this study allow women caregivers to fulfil social expectations as competent caregivers. This could entail carrying a heavier burden, making their own needs invisible to their family and to health care professionals, effective self-management of a chronic illness, in this case, can consolidate a caregiving identity. As O’Connor (2007) pointed out, self-care arises really out of a need to care for others.
Limitations of the study The limitations of this study come from the characteristics of the participants. These are women over 50 years of age, with a primary education level who live with the relative they take care of. The self-management strategies that caregivers in this study use may be different from those used by caregivers from a different socio-economic background, or by those who share the caregiving with someone else. The chronic health conditions that the participants suffered were at stable stages, which allowed them to be autonomous; hence the strategies identified in this study could be limited by this situation. As stories are shaped by the relational context, the lack of detailed information on care recipients limits the understanding of our findings.
important that interventions with family caregivers focus on their own health, promote care of their chronic illness and their quality of life. Identifying the self-management strategies of women caregivers allows health professionals to acknowledge and reinforce efficient self-care processes that improve the quality of life and deter ineffective or harmful ones. Nurses need to take into account what is acceptable to caregivers and what improves their quality of life, and make an effort to adapt self-management strategies of chronic health conditions to the lives of family caregivers. This could be achieved with interventions that enhance the caregivers’ abilities and self-confidence in the management of their chronic health conditions, support them in solving their daily health problems and meeting their needs. Health professionals and specially nurses must uncover caregivers’ with chronic illness caring needs, so appropriate services and resources are deployed. Health professionals must foster shared responsibility of family care among family members.
Acknowledgements We would like to thank the caregivers who generously shared their experiences with us and the primary healthcare professionals who helped us to contact them. We are also grateful to the management of the day centre, who facilitated our contact with the caregivers and provided us with a meeting point for discussion groups.
Conclusion
Disclosure
This study shows the capacity of women caregivers to effectively and creatively integrate the self-management of their own chronic illness within the complexity of family care. The strategies they use balance the care of their chronic illnesses with the care of the dependent relative. However, self-management of their chronic illnesses renders their health needs invisible and reaffirms them as capable caregivers. This success may lead to a perpetuation of the inequitable distribution of the care load and leave their health needs unattended. Although they need attention and support, they may remain invisible to their relatives and to health professionals.
The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Relevance to clinical practice Interventions with women caregivers focus mainly on alleviating depressive symptoms and caregiver’s burden. It is also
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Funding This project was financed by Health Research Fund of the Spanish Ministry of Health and Consumer Affairs P10/ 00558 and the Foundation for Biomedical Research at the Puerta de Hierro University Hospital in Majadahonda, Madrid.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1557–1566
Original article
Women caregivers and chronic illness
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